Arifa Akbar: Dementia is unbearable – and the system makes it worse

 

Share
Related Topics

A deluge of responses trailed this newspaper's dementia campaign last week. Nearly all the stories you shared were heartbreaking and horrifying in equal measure. Most began with the words "I simply had to write…" or "my mother/father had a similar experience" and many described a loved one's last days, months, years, in a system that sucked the dignity out of them. There were stories of over-medication, slow diagnosis, inadequate nursing care and astronomical financial burden.

Worst of all, there were accounts of sufferers being shipped to homes miles away from their families to die alone.

What did we learn from sharing our stories? That dementia is a serious illness that deserves to be seen on an epidemic scale, but also that the system can make this "long goodbye" as it is known into an unbearably painful one by its lack of money and expertise.

David Blunkett highlighted, in his piece about leaving his brain to science, that a cure is the grand hope. But as Fiona Phillips pointed out, while this eludes us, care is what counts – and government needs to give it the priority funding it deserves. One reader summed it up in a nutshell: "I am happy this problem is receiving attention. It needs to receive money."

I know from a decade's experience of my father's dementia that the doctors, nurses, carers don't mean to get it wrong, but to those who suffer, and those who watch, it may as well be wilful.

The elderly themselves are the post-war generation who were taught never to complain. Relatives often follow suit – they are grateful, they don't want to be complainers, they see the system is over-stretched, and perhaps importantly of all, they don't want to show their anger for fear it may be taken out on their loved ones. This adds to the thundering silence around the suffering.

I didn't write about my father's illness for years because I sensed that he didn't want me to make a fuss. However awful his care, he would nod and say it was "fine", seeing himself, I think, as an inconvenience and wishing for death as a way to escape. Now, I realise there are so many, far more tragic stories untold.

My grandfather, before my father, suffered from Alzheimer's for decades. A revolving circuit of extended family members would look after him in his home in Lahore. He died in his 90s, but it wasn't his illness that killed him. He suddenly stopped eating when his wife of 75 years suffered a fatal stroke. It was as if he decided that he didn't want to live without her. He died nine days later. I wonder if he would have lived as long with Alzheimer's if he had been in Britain. I'm not suggesting that Pakistan has a better system of dementia care, but here, the elderly ill are made to feel a burden. My grandfather never was.

What is most frightening is that dementia is a future that awaits "us", the young and sound of mind.

Simon Kelner is away

React Now

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

Nursery assistants required across Cambridgeshire

£21000 - £35000 per annum: Randstad Education Cambridge: Nursery assistants re...

SEN 1:1 Teacher

£120 - £130 per day: Randstad Education Chelmsford: Are you a qualified teache...

SEN Teachers and Support Staff

£50 - £130 per day: Randstad Education Chelmsford: Are you an SEN Teacher or L...

English and Media Teacher

£100 - £120 per day: Randstad Education Chelmsford: English & Media Teacher - ...

Day In a Page

Read Next
 

Scottish referendum: The people of my country have brought a catastrophe upon themselves by voting No

Simon Brooke
Young voters leave a polling station in Charlotte Square, Edinburgh  

Scottish referendum results: The independence question is resolved for a generation at least

Douglas Alexander
Mystery of the Ground Zero wedding photo

A shot in the dark

Mystery of the wedding photo from Ground Zero
His life, the universe and everything

His life, the universe and everything

New biography sheds light on comic genius of Douglas Adams
Save us from small screen superheroes

Save us from small screen superheroes

Shows like Agents of S.H.I.E.L.D are little more than marketing tools
Reach for the skies

Reach for the skies

From pools to football pitches, rooftop living is looking up
These are the 12 best hotel spas in the UK

12 best hotel spas in the UK

Some hotels go all out on facilities; others stand out for the sheer quality of treatments
These Iranian-controlled Shia militias used to specialise in killing American soldiers. Now they are fighting Isis, backed up by US airstrikes

Widespread fear of Isis is producing strange bedfellows

Iranian-controlled Shia militias that used to kill American soldiers are now fighting Isis, helped by US airstrikes
Topshop goes part Athena poster, part last spring Prada

Topshop goes part Athena poster, part last spring Prada

Shoppers don't come to Topshop for the unique
How to make a Lego masterpiece

How to make a Lego masterpiece

Toy breaks out of the nursery and heads for the gallery
Meet the ‘Endies’ – city dwellers who are too poor to have fun

Meet the ‘Endies’ – city dwellers who are too poor to have fun

Urbanites are cursed with an acronym pointing to Employed but No Disposable Income or Savings
Paisley’s decision to make peace with IRA enemies might remind the Arabs of Sadat

Ian Paisley’s decision to make peace with his IRA enemies

His Save Ulster from Sodomy campaign would surely have been supported by many a Sunni imam
'She was a singer, a superstar, an addict, but to me, her mother, she is simply Amy'

'She was a singer, a superstar, an addict, but to me, her mother, she is simply Amy'

Exclusive extract from Janis Winehouse's poignant new memoir
Is this the role to win Cumberbatch an Oscar?

Is this the role to win Cumberbatch an Oscar?

The Imitation Game, film review
England and Roy Hodgson take a joint step towards redemption in Basel

England and Hodgson take a joint step towards redemption

Welbeck double puts England on the road to Euro 2016
Relatives fight over Vivian Maier’s rare photos

Relatives fight over Vivian Maier’s rare photos

Pictures removed from public view as courts decide ownership
‘Fashion has to be fun. It’s a big business, not a cure for cancer’

‘Fashion has to be fun. It’s a big business, not a cure for cancer’

Donatella Versace at New York Fashion Week